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Hi, i'm a 29 y/o male and basically to try and keep it as short as possible. For the last, i'd say 3-1/2 years i've had strange symptoms that don't fit to any definite diagnosis. I've had MRI'S, X-rays, EMG's, all the blood works done plus countless visits to neurologists and still I have no diagnosis and they're scratching their heads. It's been a nightmare stuck in limbo. I will list a few of my symptoms as i'm just wondering if anyone else can relate. I just want to say autoimmune runs in my family. Both my first cousin and aunt have Crohn's disease.

It all started with severe burning in my right foot, then it spread to my left almost immediately and them started progressing upwards. When it got to my calfs, it started in my hands, only it's itching instead of burning. The burning an itching is still present, but for the last 2 years, my muscles (where the burning is) have been twitching and i've lost muscle mass, mostly in my feet, calves and hands, and shoulders, but it's progressing. I've had all the tests I can think of for ALS, MS, etc... I have a lot of sensory issues that have spread through my body, but no numbness, as well as ocular migraines which I get from time to time and a jagged line across my sight appears and then my vision goes in one eye. I suffer with depression and anxiety and all seems to have been triggered around the same time it's all started. Also I have noticed a mass of fruits I all of a sudden can't eat due to sensitivities that I never used to have. So i'll just bullet point symptoms, and I would really be appreciative if someone could give me their opinion or if someone has similar symptoms. Thank you in advance all :)

 

*muscle wasting 

*muscle twitching/fasciculation's

*chronic fatigue

*unsteady walking & off balance

*unable to empty bladder fully

*constipation

*itching

*brain fog

*irritability

*ocular migraines 

*depression & anxiety

*sudden food allergies 

*restless legs

 

 

 

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Have they done a celiac panel on you? Also with the MRI were there any white spots that the neuro considered 'normal'? I ask that because your symptoms are much like mine before diagnosis and I had white spots on the MRI suggestive of MS but after a spinal tap ruled out MS my neurologist said they were normal 'lots of folks have them'. He didn't know they were diagnostic of gluten ataxia. I would suffer for a few more years before I was finally diagnosed celiac. If the doctors have done all testing for celiac then IMHO you should try the diet strictly for at least 6 months. In addition have they done testing for your B12 levels? If they have what were the results? They should be over 500. If you have had more than one test for B12 check the results and see if the levels have been dropping. Your body can stop being able to utilize B12 before the levels drop below normal levels. A sublingual B12 may be helpful with the tingling sensation and it is a water soluable vitamin so don't be disturbed by the high levels in the vitamin tablets as your body will excrete any excess. I hope you get some relief soon. Do read the Newbie 101 thread at the top of the Coping section as it will have a lot of good info on what you need to do to be as strict as possible. Do make sure that your doctors have finished all celiac related testing before starting the diet as being gluten free will cause a false negative on celiac testing. The gluten free diet will not impact testing for other disorders.

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Raven hit it on the nail, you would need the Celiac Blood testing to rule out celiac, and need to be eating gluten for the test.
I had gluten ataxia, and magnesium deficiency which both caused the odd feeling issues with the legs and muscles. The ataxia later damaged my spine and brain causing long term damage, lack of feeling, messed up connections hampering pancreas and stomach functions, and brain damage causing cognitive issues.
The Magnesium Deficiency caused a fire like pin and needles feeling in my legs, and arms at its worst, random other problems including extreme constipation issues. Look it up and see just how many other issues correspond with what your dealing with. Natural Vitality Calm can be used to address this. Start at 2g (1/4tsp) and up dose 2g a day til you get loose stools then back it down 2g dosing to tolerance.
B-vitamins, not just b12 should be taken, many work synergistically, Liquid Health makes a Energy & Stress Formula and a Neurological Support Formula that you can take. Again these can cause many of the issues your dealing with.

Supplementing can help, but you need to find the cause of many issues, if it is ataxia the triggers need to be removed form the diet. If your indeed celiac then gluten free. Celiac Disease can result in poor absorption of nutrients like b-vitamins, magnesium, iron, vitamin D etc. So we often have to supplement either short or long term depending on damage and complications.
You other issues with intolerance and sensitivities to foods are something we also get, we either do not break down foods enough or get leaky gut issues. Combined with our immune systems being on guard, confused, and a mess we have other foods take flack from our systems.

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Thank you both for the information. I do really appreciate it! I have remained to eat gluten and I had my bloods take for Celiacs and for my B12 the other day and I will get the results tomorrow, so I will update you with them. 

I understand that everyone is affected differently, but did either one of you have muscle twitching or muscle wasting? I've found some case files where people have even lost ability to use limbs. On the MRI there wasn't anything but that was going back 3 years ago probably now, the least 2 1/2. Regardless of what's going on with me, i'm still going to eliminate gluten, but just waiting on what other test I may need to undergo before I do.  

One other question i'll ask. I understand that Celiacs can cause malabsorption of vitamins etc which can cause a lot of these symptoms... But if all my bloods do come back fine and they can't see any malabsorption problems, is that a huge indicative to it not being gluten related?

I would prefer to just get an endoscopy done as they seem the most accurate. Again, thank you for your replies, Mikey 

 

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It is not always malabsorption with celiac disease.  Celiacs seem to have leaky gut issues due to excess Zonulin. Researchers think it might be the key to many other illnesses (e.g. autoimmune)  where inflammation is involved.  Celiac disease is definitely systemic.  The impact to the neurological system is still being studied.    Learn more:

https://m.youtube.com/watch?v=wha30RSxE6w

 

Edited by cyclinglady
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I did have muscle twitching & muscle wasting. In fact, one of my 1st signs of cross contamination is a muscle under my right eye starts twitching. Drives me batty!!!! That thing twitched for a solid year pre diagnosis. 

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Hi :) muscle wasting was one of the first signs that I was not well at all! I had significant neuro issues and debilitating vertigo until a few weeks ago after being diagnosed and going gluten-free. Twitching still happens especially when tired. The vision issues plagued me: I couldn't even read properly for months. Now? Absolutely PERFECT! Muscles are far more co-ordinated now that I am off gluten entirely. This disease wreaks havoc in the neuro system for some of us and I am so so blessed that most have gone permanently since going gluten-free. I had severe vertigo within 30 minutes of having a spice in dinner that had gluten in it! Then could barely walK for two days. Look into your magnesium levels too for a lot of your symptoms...I use a spray on my aching muscles but not too much. Taking lots of pea protein etc to increase muscle gain, slippery elm yo heal the gut: lots out there.  I had almost all your symptoms! Good luck! This is such a hard journey but we do get it! Vent away ♡

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So great you are getting tested. Celiac affects the Vegus nerve attached to the GI system creating all sorts of symptoms as do vitamin deficiencies. I have been blood, biopsy and genetic test positive Celiac. gluten-free for 11 years but have many of your symptoms. I found I am MTHFR genetic test positive  as well and must avoid foilic acid and take 3000kmg of L methylfolate for my nervous system. I am diagnosed Myofacial pain syndrome and Fibromyalgia. I am doing the Fm/a test for autoimmune markers soon. Many people on my fibromyalgia support group describe many of your symptoms. Ataxia you describe is directly linked to Celiac though and I hope you get some answers soon.

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6 hours ago, pikakegirl said:

I am diagnosed Myofacial pain syndrome and Fibromyalgia. I am doing the Fm/a test for autoimmune markers soon. Many people on my fibromyalgia support group describe many of your symptoms

Pikakegirl,

If you are in fibro support group you probably already know this but check your Vitamin D level.

the vitamin d council reports as much as 43% of fibro patients (at least in the UK) are low in vitamin D levels. 

https://www.vitamindcouncil.org/health-conditions/fibromyalgia/

Also check your meds?  Statins can cause muscle pain than can be confused for Firbro.

I ran across some information that might be of help too you.

See this research on the role EBV can play in CFS/ME.

http://simmaronresearch.com/2015/08/epstein-barr-virus-the-magnesium-connection/

I hope this is helpful but it is not medical advice.

"Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2:7

Posterboy by the grace of God,

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On 10/15/2018 at 1:47 PM, Posterboy said:

Pikakegirl,

If you are in fibro support group you probably already know this but check your Vitamin D level.

the vitamin d council reports as much as 43% of fibro patients (at least in the UK) are low in vitamin D levels. 

https://www.vitamindcouncil.org/health-conditions/fibromyalgia/

Also check your meds?  Statins can cause muscle pain than can be confused for Firbro.

I ran across some information that might be of help too you.

See this research on the role EBV can play in CFS/ME.

http://simmaronresearch.com/2015/08/epstein-barr-virus-the-magnesium-connection/

I hope this is helpful but it is not medical advice.

"Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2:7

Posterboy by the grace of God,

Thank you poster boy. Yes all those have been addressed. Taking D3 daily and refuse to take meds with muscle pain as side effect. I am EBV positive and unfortunately cannot tolerate magnesium supplements of any kind causing extreme GI cramping. I eat foods daily high in magnesium though. Sharing what we have learned is always welcome. Even repeating it can help others or stir our memories over the years. 11 yesrs gluten-free.

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23 hours ago, pikakegirl said:

Thank you poster boy. Yes all those have been addressed. Taking D3 daily and refuse to take meds with muscle pain as side effect. I am EBV positive and unfortunately cannot tolerate magnesium supplements of any kind causing extreme GI cramping. I eat foods daily high in magnesium though. Sharing what we have learned is always welcome. Even repeating it can help others or stir our memories over the years. 11 yesrs gluten-free.

have you tried mag delay/mag 64?  i can not take mag ox, or mag citrate.  but i do tolerate mag 64

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Thank you frieze, will research this. I really need a magnesium supplement.

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13 hours ago, pikakegirl said:

Thank you frieze, will research this. I really need a magnesium supplement.

you can use epsom salts in soaks/bath.  also, lotion/oil.

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Sounds like everything I have.

I would try taking antihistamines and see if that alters your sensitivity to all the new foods that make you ill. If so, you are an excellent candidate for mast cell activation syndrome which causes histamine intolerance. Mast cell activation syndrom (MCAS), according to Dr. Leonard Weinstock, a St. Louis researcher who has been the go-to for celiacs for at least 15 years, is much more prevalent that previously thought. Lots of celiacs have MCAS. 

If you are having a hard time getting diagnosed with neurologic problems, then you need to look seriously into small-fiber neuropathy. It won't show up on regular nerve tests. It's only diagnosed by skin biopsy of the leg and waist to see if there is a different cellular structure caused by less blood flow to the extremities. 

You want to have your B12 between 800 an 1200. I know that's out of the normal range, but our normal range is a terrible thing to strive for. Many get nerve damage in that range.

Best of luck to you; don't give up! Also, check out Sjogren's syndrome. Lots of us celiacs have that as well and it's like having MS + lupus + sicca symptoms for all the damage it can do.

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2 hours ago, Kit Kellison said:

Sounds like everything I have.

I would try taking antihistamines and see if that alters your sensitivity to all the new foods that make you ill. If so, you are an excellent candidate for mast cell activation syndrome which causes histamine intolerance. Mast cell activation syndrom (MCAS), according to Dr. Leonard Weinstock, a St. Louis researcher who has been the go-to for celiacs for at least 15 years, is much more prevalent that previously thought. Lots of celiacs have MCAS. 

If you are having a hard time getting diagnosed with neurologic problems, then you need to look seriously into small-fiber neuropathy. It won't show up on regular nerve tests. It's only diagnosed by skin biopsy of the leg and waist to see if there is a different cellular structure caused by less blood flow to the extremities. 

You want to have your B12 between 800 an 1200. I know that's out of the normal range, but our normal range is a terrible thing to strive for. Many get nerve damage in that range.

Best of luck to you; don't give up! Also, check out Sjogren's syndrome. Lots of us celiacs have that as well and it's like having MS + lupus + sicca symptoms for all the damage it can do.

Thanks for bringing up Mast Cell Activation Disorder up!  Untreated celiac disease or gluten exposures can make this condition much worse.  

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